Using the Knowledge to Action framework to improve housing and support for people with Multiple Sclerosis
Lee Cubis
A B * , Sharyn McDonald A C D , Pamela Dean A , Robin Ramme A , Kate D’Cruz A B , Megan Topping A B , Fiona Fisher E , Di Winkler A B and Jacinta Douglas A B
A
B
C
D
E
Abstract
People with Multiple Sclerosis (MS) have unique housing and support needs that are essential for maintaining independence at home; however, there is limited research to guide the design of community living options for this population. The aim of this study was to examine housing and support needs and preferences of people with MS with the intention to inform the planning of a co-designed intervention based on the study’s findings.
Using the Knowledge to Action (KTA) framework, quantitative (n = 79) and qualitative (n = 6) data from people with MS were extracted and integrated from projects completed by the research team that explored the housing and support needs and preferences of people with disability. Results were synthesised and presented to a reference group for validation, contextualisation, and adaptation to the Australian context.
High physical support needs were common across participants. People most commonly required home modifications to improve accessibility, such as ramps, equipment such as heating and cooling, and assistive technology. Many people required more than 8 hours per day of paid support. Moving into individualised housing facilitated independence and community reintegration. People reported gaps between what they wanted from support workers and what they received, citing individual and systemic barriers.
People with MS have support needs that require proactive and responsive funding arrangements, housing design and support provision. In line with KTA principles, findings will inform the planning of a co-designed intervention that involves people with lived experience of MS and other stakeholders to influence policy and improve home and living outcomes for this population.
Keywords: disability support, hospital discharge, housing, knowledge to action framework, Multiple Sclerosis, National Disability Insurance Scheme, progressive neurological disorders, specialist disability accommodation.
References
Assistive Technology for All (2020) State-based aids and equipment programs. Available at https://assistivetechforall.org.au/at-funding-outside-the-ndis/state-based-aids-and-equipment-programs/
Australian Bureau of Statistics (ABS) (2012) Profiles of disability, Australia, 2009 (No. 4429.0). Available at http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4429.0main+features100182009
Australian Government Department of Social Services (2019) ‘Younger people in residential aged care – action plan.’ (Commonwealth of Australia: Canberra, Australia) Available at https://www.dss.gov.au/disability-and-carers/programmes-services/for-people-with-disability/younger-people-with-disability-in-residential-aged-care-initiative
Australian Building Codes Board (2022) New livable housing design requirements. Available at https://ncc.abcb.gov.au/news/2022/new-livable-housing-design-requirements
Australian Government (2023) Working together to deliver the NDIS. NDIS Review: Final Report. Available at https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis/part-one-unified-system-support-people-disability-8
Benedict RH, Carone DA, Bakshi R (2004) Correlating brain atrophy with cognitive dysfunction, mood disturbances, and personality disorder in multiple sclerosis. Journal of Neuroimaging 14(3), 36S-45S.
| Crossref | Google Scholar |
Benedict RH, Zivadinov R (2011) Risk factors for and management of cognitive dysfunction in multiple sclerosis. Nature Reviews Neurology 7(6), 332-342.
| Crossref | Google Scholar | PubMed |
Bishop M, Sheppard-Jones K, Roessler RT, Rumrill PD, Waletich B, Umeasiegbu V (2013) Specialized housing needs of Americans with multiple sclerosis: descriptive results of a national analysis. Journal of Vocational Rehabilitation 39, 111-125.
| Crossref | Google Scholar |
Bishop M, Dennis KL, Bishop LA, Sheppard-Jones K, Bishop F, Frain M (2015) The prevalence and nature of modified housing and assistive devices use among Americans with multiple sclerosis. Journal of Vocational Rehabilitation 42, 153-165.
| Crossref | Google Scholar |
Bo M, Charrier L, Bartalini S, Benvenuti M, Oggero A, Ulivelli M, Gabbrielli M, Bertolotto A, Gianino MM (2018) Access to social security benefits among multiple sclerosis patients in Italy: a cross-sectional study. Multiple Sclerosis and Related Disorders 24, 107-112.
| Crossref | Google Scholar |
Braun V, Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), 77-101.
| Crossref | Google Scholar |
Çakır HS, Tosun A (2022) Universal design approach to analysis of physical environment for users with multiple sclerosis. Journal of Accessibility and Design for All 12(2), 284-319.
| Crossref | Google Scholar |
Callaway L, Winkler D, Tippett A, Herd N, Migliorini C, Willer B (2016) The Community Integration Questionnaire–Revised: Australian normative data and measurement of electronic social networking. Australian Occupational Therapy Journal 63(3), 143-153.
| Crossref | Google Scholar | PubMed |
Carey G, Malbon E, Olney S, Reeders D (2018) The personalisation agenda: the case of the Australian National Disability Insurance Scheme. International Review of Sociology 28(1), 20-34.
| Crossref | Google Scholar |
Charmaz K (2006) ‘Constructing grounded theory: a practical guide through qualitative analysis.’ (Sage Publications) Available at http://www.sxf.uevora.pt/wpcontent/uploads/2013/03/Charmaz_2006.pdf
Chen MH, Goverover Y, Botticello A, DeLuca J, Genova HM (2022) Healthcare Disruptions and Use of Telehealth Services Among People With Multiple Sclerosis During the COVID-19 Pandemic. Archives of Physical Medicine and Rehabilitation 103(7), 1379-1386.
| Crossref | Google Scholar | PubMed |
Cowan CK, Pierson JM, Leggat SG (2018) Psychosocial aspects of the lived experience of multiple sclerosis: personal perspectives. Disability and Rehabilitation 42(3), 349-359.
| Crossref | Google Scholar | PubMed |
Cubis L, Ramme R, Roseingrave E, Minter ER, Winkler D, Douglas J (2022) ‘Evaluating the discharge planning process.’ (Summer Foundation) Available at https://apo.org.au/node/317909
De Angelis M, Lavorgna L, Carotenuto A, Petruzzo M, Lanzillo R, Brescia Morra V, Moccia M (2021) Digital technology in clinical trials for multiple sclerosis: systematic review. Journal of Clinical Medicine 10(11), 2328.
| Crossref | Google Scholar | PubMed |
De Dios Perez B, Pritchard C, Powers K, Nair RD, Evangelou N, Ford H, et al. (2024) The Impact of COVID-19 on the Employment of People With Multiple Sclerosis: A Multi-Methods Study. International Journal of MS Care 26(3), 174-186.
| Crossref | Google Scholar |
Department of Health (2024) ‘Victorian Aids and Equipment Program.’ (Victoria State Government) Available at https://www.health.vic.gov.au/supporting-independent-living/victorian-aids-and-equipment-program
Doolan DM, Froelicher ES (2009) Using an existing data set to answer new research questions: a methodological review. Research and Theory for Nursing Practice 23(3), 203-215.
| Crossref | Google Scholar | PubMed |
Douglas J, Winkler D, Oliver S, Liddicoat S, D’Cruz K (2023) Moving into New Housing Designed for People with Disability: Preliminary Evaluation of Outcomes. Disability and Rehabilitation 45(8), 1370-1378.
| Crossref | Google Scholar | PubMed |
Douglas J, Winkler D, D’Cruz K, Oliver S, Liddicoat S, Naismith J, Wakim D (2024) Being a pioneer: a qualitative study of moving into individualised housing from the perspective of adults with neurological disability. Brain Impairment 25(1), IB23079.
| Crossref | Google Scholar |
Dyck I (1995) Hidden geographies: the changing lifeworlds of women with multiple sclerosis. Social Science & Medicine (1982) 40(3), 307-320.
| Crossref | Google Scholar | PubMed |
Fisher KR, Purcal C, Jones A, Lutz D, Robinson S, Kayess R (2019) What place is there for shared housing with individualized disability support? Disability and Rehabilitation 43(1), 60-68.
| Crossref | Google Scholar |
Flensner G, Ek A-C, Söderhamn O, Landtblom A-M (2011) Sensitivity to heat in MS patients: a factor strongly influencing symptomology – an explorative survey. BMC Neurology 11, 27.
| Crossref | Google Scholar | PubMed |
Golla H, Galushko M, Pfaff H, Voltz R (2012) Unmet needs of severely affected multiple sclerosis patients: the health professionals’ view. Palliative Medicine 26(2), 139-151.
| Crossref | Google Scholar | PubMed |
Graham D, Greenland R (2022) ‘Pre-budget submission for the 2022-23 Federal Budget.’ (MS Australia) Available at https://www.msaustralia.org.au/wp-content/uploads/2022/09/pre-budget-submission-ms-australia.pdf
Graham ID, Logan J, Harrison MB, Straus SE, Tetroe J, Caswell W, Robinson N (2006) Lost in knowledge translation: time for a map? Journal of Continuing Education in the Health Professions 26(1), 13-24.
| Crossref | Google Scholar | PubMed |
IPSOS (2020) Analysis of younger people living in residential aged care. Available at https://www.health.gov.au/sites/default/files/documents/2020/09/analysis-of-younger-people-living-in-residential-aged-care.pdf
Johnston MP (2014) Secondary data analysis: a method of which the time has come. Qualitative and Quantitative Methods in Libraries 3(3), 619-626.
| Google Scholar |
Kantor D, Bright JR, Burtchell J (2018) Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Patient Education. Neurology and Therapy 7(1), 23-36.
| Crossref | Google Scholar | PubMed |
Kister I, Bacon TE, Chamot E, Salter AR, Cutter GR, Kalina JT, Herbert J (2013) Natural history of multiple sclerosis symptoms. International Journal of MS Care 15(3), 146-156.
| Crossref | Google Scholar | PubMed |
Korchut A, Petit V, Szwedo-Brzozowska E, Rejdak K (2022) Assistive technology in multiple sclerosis patients – two points of view. Journal of Clinical Medicine 11(14), 4068.
| Crossref | Google Scholar | PubMed |
Leclerc-Loiselle J, Legault A (2018) Introduction of a palliative approach in the care trajectory among people living with advanced MS: perceptions of home-based health professionals. International Journal of Palliative Nursing 24(6), 264-270.
| Crossref | Google Scholar | PubMed |
Lechner-Scott J, Reeves P, Ribbons K, Saugbjerg B, Lea R (2021) Do people with multiple sclerosis receive appropriate support from the National Disability Insurance Scheme matching their level of disability? A description of disease ‘burden and societal cost in people with multiple sclerosis in Australia’ (BAC-MS). Australian Health Review 45, 745-752.
| Crossref | Google Scholar | PubMed |
Liković M, Buljevac M (2023) “You look really good, I don’t know why you came here”: persons with multiple sclerosis’ perspectives on social support. Home Health Care Services Quarterly 42(3), 243-264.
| Crossref | Google Scholar | PubMed |
Livable Housing Australia (2017) ‘Livable Housing Design Guidelines.’ (Livable Housing Australia) Available at https://livablehousingaustralia.org.au/downloads/
Lublin F, Reingold S, Cohen J, Cutter G, Sorensen P, Thompson A, Wolinsky J, Balcer L, Banwell B, Barkhof F, Bebo B, Calabresi P, Clanet M, Comi G, Fox R, Freedman M, Goodman A, Inglese M, Kappos L, et al. (2014) Defining the clinical course of multiple sclerosis: the 2013 revisions. Neurology 83(3), 278-286.
| Crossref | Google Scholar |
Maguire R, Deane-King J, Fahy A, Larkin A, Coote S (2023) An evaluation of the role of community care in meeting the needs of people with multiple sclerosis in Ireland. Multiple Sclerosis and Related Disorders 69, 104419.
| Crossref | Google Scholar | PubMed |
McCabe M, Ebacioni MK, Simmons R, McDonald E, Melton L (2012) ‘A needs analysis of Australians with MS.’ (Multiple Sclerosis Research Australia: North Sydney, Australia) Available at https://www.msaustralia.org.au/wp-content/uploads/2016/03/National-MS-Needs-Analysis-2012-2.pdf
Multiple Sclerosis Society (2014) ‘MS Essentials for people living with MS.’ (Multiple Sclerosis Society) Available at https://www.mssociety.org.uk/sites/default/files/2020-10/Adaptions-and-your-home-booklet-MSS.pdf
National Multiple Sclerosis Society (2023) ‘Relapsing-remitting Multiple Sclerosis (RRMS).’ (National Multiple Sclerosis Society) Available at https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Relapsing-remitting-MS
NDIA (2016) National Disability Insurance Agency Annual Report 2016. Available at https://www.ndis.gov.au/about-us/publications/annual-report/annual-report-2015-16
NDIS (2021a) ‘Participants with a progressive neurological condition in the NDIS.’ (NDIS) Available at https://data.ndis.gov.au/reports-and-analyses/participant-groups/participants-neurodegenerative-condition-ndis
NDIS (2021b) Supported Independent Living for participants. Available at https://www.ndis.gov.au/participants/home-and-living/supported-independent-living-participants
NDIS (2022a) ‘Specialist disability accommodation.’ (NDIA) Available at https://www.ndis.gov.au/providers/housing-and-living-supports-and-services/specialist-disability-accommodation
NDIS (2022b) ‘Market Monitoring.’ (NDIA) Available at https://data.ndis.gov.au/reports-and-analyses/market-monitoring#specialist-disability-accommodation-sda-quarterly-report
NDIS (2023a) ‘Multiple Sclerosis Summary – June 2023.’ (NDIA) Available at https://data.ndis.gov.au/media/3824/download?attachment
NDIS (2023b) ‘National Quarterly Performance Dashboard as at 30 June 2023.’ Available at (NDIA) Available at https://www.ndis.gov.au/media/6257/
NDIS (2023c) ‘Change in circumstances.’ (NDIA) Available at https://www.ndis.gov.au/participants/using-your-plan/changing-your-plan/change-circumstances
NDIS (2023d) ‘Participant Service Guarantee.’ (NDIA) Available at https://www.ndis.gov.au/about-us/policies/service-charter/participant-service-guarantee
O’Cathain A, Croot L, Duncan E, Rousseau N, Sworn K, Turner KM, et al. (2019) Guidance on how to develop complex interventions to improve health and healthcare. BMJ Open 9(8), 029954.
| Crossref | Google Scholar | PubMed |
Oliver S, Gosden-Kaye EZ, Jarman H, Winkler D, Douglas JM (2020) A scoping review to explore the experiences and outcomes of younger people with disabilities in residential aged care facilities. Brain Injury 34(11), 1446-1460.
| Crossref | Google Scholar | PubMed |
Patten SB, Williams JVA, Lavorato DH, Terriff D, Metz LM, Berzins S, Bulloch AGM (2012) Perceived met and unmet health-care needs in a community population with multiple sclerosis. International Journal of MS Care 14, 2-8.
| Crossref | Google Scholar | PubMed |
Powell BJ, Fernandez ME, Williams NJ, Aarons GA, Beidas RS, Lewis CC, McHugh SM, Weiner BJ (2019) Enhancing the impact of implementation strategies in healthcare: A research agenda. Frontiers in Public Health 7, 3.
| Crossref | Google Scholar | PubMed |
Riazi A, Bradshaw SA, Playford ED (2012) Quality of life in the care home: a qualitative study of the perspectives of residents with multiple sclerosis. Disability and Rehabilitation 34(24), 2095-2102.
| Crossref | Google Scholar | PubMed |
Roessler RT, Bishop M, Rumrill PD, Sheppard-Jones K, Waletich B, Umeasiegbu V, Bishop L (2013) Specialized housing and transportation needs of adults with multiple sclerosis. Work 45, 223-235.
| Crossref | Google Scholar | PubMed |
Rothman R, Wellecke C, Rathbone A, Winkler D, Aimers N (2022) ‘Housing SeekerSnapshot.’ (Housing Hub and Summer Foundation) Available at https://www.housinghub.org.au/resources/article/housing-hub-data-snapshot-housing-seekers
Sá MJ (2008) Psychological aspects of multiple sclerosis. Clinical Neurology and Neurosurgery 110(9), 868-877.
| Crossref | Google Scholar | PubMed |
Sheppard-Jones K, Bishop M, Kinyanjui B, Roessler R, Rumrill PD, Waletich B, Umeasiegbu V (2013) Specialized housing policies, resources, and services for Americans with multiple sclerosis: Priorities for a national agenda. Journal of Rehabilitation 79(4), 15-22.
| Google Scholar |
Squires LA, Williams N, Morrison VL (2019) Matching and accepting assistive technology in multiple sclerosis: a focus group study with people with multiple sclerosis, carers and occupational therapists. Journal of Health Psychology 24(4), 480-494.
| Crossref | Google Scholar | PubMed |
Summers MP, Simmons RD, Verikios G (2012) Keeping Cool: Use of Air Conditioning by Australians with Multiple Sclerosis. Multiple Sclerosis International 2012, 794310-794316.
| Crossref | Google Scholar | PubMed |
Synnot AJ, Hill SJ, Garner KA, Summers MP, Filippini G, Osborne RH, Shapland SDP, Colombo C, Mosconi P (2016) Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health. Health Expectations 19(3), 727-737.
| Crossref | Google Scholar |
Tabuteau-Harrison SL, Haslam C, Mewse AJ (2016) Adjusting to living with multiple sclerosis: the role of social groups. Neuropsychological Rehabilitation 26(1), 36-59.
| Crossref | Google Scholar | PubMed |
Topping M, Douglas J, Winkler D (2022) “They treat you like a person, they ask you what you want”: a grounded theory study of quality paid disability support for adults with acquired neurological disability. Disability and Rehabilitation 45(13), 2138-2148.
| Crossref | Google Scholar | PubMed |
Verikios G, Summers MP, Simmons RD (2013) The Costs of Keeping Cool for Australians with Multiple Sclerosis. The Australian Economic Review 46(1), 45-58.
| Crossref | Google Scholar |
Walton C, King R, Rechtman L, Kaye W, Leray E, Marrie RA, Robertson N, la Rocca N, Uitdehaag B, van der Mei I, Wallin M, Helme A, Angood Napier C, Rijke N, Baneke P (2020) Rising prevalence of multiple sclerosis worldwide: insights from the Atlas of MS, third edition. Multiple Sclerosis 26(14), 1816-1821.
| Crossref | Google Scholar | PubMed |
Welsh Government (n.d.) Adapt your home before returning from hospital. Available at https://www.gov.wales/adapt-your-home-returning-hospital [Retrieved 15 August 2023]
Winkler D, Farnworth L, Sloan S (2006) People under 60 living in aged care facilities in Victoria. Australian Health Review 30(1), 100-108.
| Crossref | Google Scholar | PubMed |
